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stumbler
1 year ago

@momoftwo , there’s been a few posts on the subject of Cladribine (Mavenclad). Use the Forum Search function (Magnifying glass towards the top left of the page) and search for “Cladribine”.


edmontonalberta
1 year ago

Approved in Canada for RRMS. Good luck…


mmhhpp
1 year ago

I hope to get soon on it!!! Fingers cross. It is a promising drug. No very nasty secondary effects. Xx


momoftwo
1 year ago

Thanks stumber but I was actually hoping to talk to someone who is currently taking the meds.


poppy12
1 year ago

Hi @momoftwo I just googled Mavenclad and if and when it was approved in Europe and hence the UK (many Shift peeps are UK based I think).

Result: Mavenclad was only approved over here in late August this year. Because of this, I think there will be very few people with experience of it but the numbers will be raising.

You will be one of the trailblazers. Good luck, the stats look promising x


edgarleroy
1 year ago

I’ve completed the full course of the injectable form of cladribine. Very easy to tolerate – highly recommend. I continued work each day after taking the shots at home at night. The drug clears out a day after each dose, but the effects last years.


aabreu
1 year ago

Hi edgarleroy
How did you get treatment? in San Diego?
Has the treatment stopped your MS?


edgarleroy
1 year ago

@aabreu I took the injectable form of cladribine as an off-label MS treatment. The people at Barts in London have developed a protocol that I followed. I got my neuro to prescribe the drug, found a speciality pharmacy in Sacramento that would sell it to me and I did the sub-Q injections at home. It was easy for me to tolerate, I was able to not miss any work days and there is minimal blood monitoring required.

Has it stopped my MS? I am pretty sure that it has slowed it down a lot in the 1.5 years since I started. My MS is the non-relapsing type, so it’s not easy to tell. I am also taking simvastatin as a potential neuroprotectant and 300mg/day of biotin. I really wish that I could have taken it back in the 80’s or 90’s, before I had so much nerve damage.

The fact that cladribine is a small molecule that gets into the brain and lymph nodes to slowly deplete the B- & T-cells makes me think that this drug has the best chance to slow down progressive MS.

The Barts website has lots of info about cladribine: http://multiple-sclerosis-research.blogspot.com/2015/12/cladribine4ms.html

It took a fair amount of effort to get this going. Most people were not at all comfortable letting me self-inject an IV cancer drug at home. Send me a pm if you want more info.

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